New Rule: Can't see our own machine...is this even legal?

[circleNthedrain]

The unit I've been at for over 3 years just moved to a brand new facility.  I expected some new rules since the management has recently changed, but I didn't see this one coming.  After I was hooked up, I asked for the machine to be turned so I could see the screen....NO! was the reply.  Apparently they have decided all the machines must face the nursing station (which we all face too).  I said "fine, just turn it slightly toward me so I can read my B/P and needle pressures".  Even got the manager and the neph out there....sorry, it's the rule.  I have always taken an active role in my health care...this just seems WRONG to me.  Anyone else had this, any thoughts? 

[tyefly]

You might have to change clinics....... its your health.... go to a place where you can be in charge....Have you tried Nxstage....

[circleNthedrain]

tyefly...yeah, im thinkin of changing units.  i wish i could do Nxstage but my hands dont work well enough due to neuropathy from ESRD.

[jbeany]

Can you learn to read backwards?  Take along a hand mirror with a handle, and reach around to see the screen.

And it's a dumb rule!

[Jean]

Boy is that ever a stupid rule!!!! But, I dont have any helpful suggestions, sorry.

[RichardMEL]

how very frustrating. I hate it when they do stuff like that. Sometimes I get the odd nurse who doesn't like to move the machine towards me so I can read it. I think they're worried I'm going to try and run things by (shock horror) pressing my own buttons, managing alarms, UF etc - which I used to do but have been slapped around for due to new rules. I am complying with that one (grumble) and so far they let me see the machine - I think 90% of the nurses understand and appreciate that I do take a very active interest in my treatment, labs, situation etc and are willing to go with that (they even let me decide my UF, temp etc... but gee, I just can't set it on the machine.. go figure). Still at least most of them seem to respect my intelligence and understanding enough to not give me grief if I want to change things a bit or whatever - which is something.

As for what you can do? gee... write a polite letter to the F/A and your neph explaining your desire to be able to read the machine as part of your active involvement with your treatment. You're not asking it to be moved out of sight of the nurses station so they can still see if it alarms or whatever, just a bit around so you can read it. That doesn't seem unreasonable to me and you'd think they'd appreciate a patient who gives a damn about their own care....

[karen547]

This pissed me off too! I am so sick of 'management' and their rules!!! If this happens at my unit ever I am not staying! We as patients have a right to see our machines, etc. I find at my unit some of the techs, etc are playing on their cell phones, or just dropping the ball in general a lot of the time anyways, and if I couldnt see my machines screen, I would be in trouble because sometimes i'm the only one paying attention.  I hope you find a solution

[MooseMom]

I find this really disturbing.  My mom is on dialysis, and the times I've gone to pick her up, I'll go in and sit next to her and look at the numbers on her machine.  Since I know I'll be starting D soon, I'm interested in learning what the machine tells you.  I have to say that the very first time I went into the clinic, I noticed that she could not see the numbers and realized that none of the patients were seated to where they could look.

I am starting to make a mental list of things that I don't want to happen in my clinic once I start; this list I've gleaned from comments you all have made in the past.  I don't want my labs to have smiley faces on them (my mom's does, and she's in her 80's.  She not a child, and neither am I).  Second, I want to learn to do my sticking myself.  Third, I want to be trained on NxStage.  Fourth, I want to be able to see the numbers on the machine while dialyzing in-clinic before I can start hemo at home.  What other things do you think I should make clear from the very beginning?  And how should I approach it?  Should I have a quiet word with the SW before my first treatment?

[monrein]

I needed to know every single thing they were doing to the machine, why and what the implications were.  If whoever was doing it couldn't explain it in a way that made sense to me then I'd ask for the more senior nurse.  Same with needling me (only at the very beginning before I started my own sticking), I wanted to know what they were feeling for, why they thought that was a good spot and I insisted that they laddered, no sticking the easiest spot each time. 
I was at a self-care clinic after the first two weeks so obviously patients were encouraged and supported to do and learn as much as we possibly could.  Even at the hospital I've never ever been told I couldn't have the machine facing me and it was usually done automatically.  If they forgot and I had to ask, they said sorry and did it immediately.  I've also witnessed nurses giving a lesser experienced colleague heck for not being attentive enough to the blood pressure of a patient and remember well one nurse saying.."How would you like it if it were you sitting in that chair."
I've had the occasional run in with stupid stuff but overall I think I've had excellent care, respect and consideration from staff in spite of the fact that obviously things get busy and we have too many patients and too few staff in our dialysis units.  We are only stuck by nurses, techs clean and set up machines but never touch patients.  I did my best to be understanding of their stresses too and if I snapped or was irritable or unreasonable I always made sure to apologize and take responsibility for what I said to them. 

[MooseMom]

I suppose as with anything else, if you treat people with respect and show that you are mindful of their stresses, a request presented in a thoughtful manner will most likely get a more positive response.  I'm always careful to show gratitude toward anyone who helps me out, and I think people appreciate that.  I know I would. 

[Rerun]

I like the long handled mirror idea!   

They stuck me under an Air Conditioner cold hole one time and would not change anything, so I brought an umbrella to deflect the air.  They moved me.  OMG it was too embarrassing for them trying to explain to the doctors coming in why the lady in the corner had an umbrella up in the room.

Yes, you should be able to see your machine.  Tell them you are going to check with the Company Headquarters to see if that is a rule.

Yes, one thing we can do is take our Medicare and maybe private insurance and walk to another clinic with different rules.  Customer service should be number 1.

[monrein]

   I so love the umbrella!!!! And I would have done that too.   

[texasstyle]

I'm thinking it is so the nurses can have a constant visual on the machine & not so much intended to shut the patient out of their care. Thing is they should have thought that rule out a little bit better.

[karen547]

I told my nurses and techs about this and they thought it was weird, I mean I can see them saying not to touch it, but to be unable to see it at all? That seems a bit much. I am allowed to touch my machine, especially when it alarms if I move, or I am suddenly feeling off and need to check my BP, I hope you find a solution to this.

[circleNthedrain]

Thank you all so much for your helpful replies.  This is such a GREAT support group!  I am happy to say they have backed off this stupid rule and will now angle the machine toward us if we request it.  I think so many patients complained that they had to give in. 

[galvo]

Good result.

[Lillupie]

wheNever I get a break from PD, I had one mean tech that said  no to me looking at the machine. I have a right to know my treatment. I run everything when i am on PD at home. I really dont trust the medical community. They think we a bunch of stupid idoits who cant learn anything.

Lisa

[keefbeer]

So the nurse cannot see your monitor from where they are sitting, you should tell her to get off here arse and take a walk around THEIR patients

[thegrammalady]

i'm allowed to touch my machine too. but then i've had the same nurse for 3 years and she knows i know what i'm doing. when i go to the clinic in oregon they get a bit upset if i touch the machine. the nurse told me she could louse her license. my machine is always turned so i can see it. do you use a fresenius clinic? i have learned that all clinics, even run by the same company are not created equal. the clinic in oregon cannot give you water. they are not allowed to give nourishment. now you tell me when water was ever considered nourishment! necessary for life, yes, but not nourishment. send a complaint in writing to corporate. you have a right to monitor your own health and in my book an obligation to monitor the competency of all clinic staff. and that includes the right to see that they have set the machine up properly.  i've been known to tell people "it's my life, do it my way or your don't do it at all"